Transplant

[Lippy42]

Hi I'm sat here with lots of questions in my head will ste go to the nearest transplant hospital and the donor liver get sent there or could he go to any hospital that do transplants and will I follow in the car will I stay near the hospital will I have to look for a b&b how does the process work my mind is in overdrive and of course this is presuming he gets accepted on the list 😳

[Lils2019]

Hi there,My husbands consultant at our local hospital referred over to the QEB. One of the hospitals that do transplants.

He was assessed as an inpatient due to it been quite a way from home.

There are 7 hospitals that do transplants and he will be referred to one of these, usually the closest one to you.

They contact you when a liver becomes available and you usually have to make your own way in.

Patient gets admitted and family members are obviously sent home.

This will all be discussed in-depth with you and your husband, or at least it should be as part of the assessment.

My husband was assessed but sadly didn’t make the list, he’s too unwell. He has underlying health issues which we were not aware until he had his assessment.

Write down any questions you have, and they can be answered by the liver transplant team.

Do you know where he is been referred to?

Good luck x

[Lippy42 in reply to Lils2019]

We are at the beginning of the journey ste goes for endoscopy in 2 weeks mri scan and heart then we go back to his consultant that's when I will ask these questions thanks for replying x

[Richard-Allen]

Hello Lippy. There are seven regional Liver Transplant centres. These are at:

1. Birmingham Queen Elizabeth Hospital

2. Cambridge Addenbrooke's Hospital

3. Edinburgh - Royal Infirmary

4. St James University Hospital Leeds (affectionately known as "Jimmy's")

5. Kings College Hospital London

6. Royal Free Hospital London.

7. Newcastle Freeman Hospital

There are no liver transplant centres in Wales or Northern Ireland. For those people from Northern Ireland in need of a liver transplant have to travel to either the QE Birmingham or Jimmy's in Leeds. Those people from South Wales will have to travel to the Royal Free in London, or the QE Birmingham. Mid and North Wales the QE, or Jimmy's.

Most transplant centres will advice you on local available accommodation.

Before anyone is considered suitable for a liver transplant they have to undergo a two-day assessment Here they will be introduced to a team of up to five people. This team will consist of an anesthetist, a liver surgeon, a liver nurse, and a psychiatric nurse or doctor.

The following website information from the QE Birmingham maybe of some use: tya.uhb.nhs.uk/liver-transp...

The reason as to why a person needs a liver transplant is important. If it is alcohol related, then they need to prove that they no longer have a alcohol problem, that they haven't consumed any alcohol, or alcohol-free drinks for the past 6-months.

If it is alcohol related, then the patient may have to enter into a pact and sign a contract that they will never drink again.

The psychiatric nurse will have to be sure that any addiction of alcohol abuse in the past has been dealt with and that it is likely that the patient will not relapse at any point in the future. They also a need to make sure that this person doesn't harbour any suicidal thoughts or has attempted suicide in the past. They have to prove a willingness to want to live.

Between now and when you get called forward, try and make a list of any question you may wish to ask. This will do two things, firstly it will give you the answers you seek, but also it will show the transplant assessment team that your are genuine and that you have taken the matter seriously. The final decision as to whether or not a person goes onto the liver Transplant waiting list isn't made by one person, it is a team decision.

Good luck, and please let us know how you get on.

Richard

[Richard-Allen in reply to Richard-Allen]

Sorry, I forgot to mention that the following publication might be helpful too: flipbooks.leedsth.nhs.uk/LN...

[Lippy42 in reply to Richard-Allen]

Thankyou for your info we at the first part of the process so got a long way to go but thankyou x

[Ewife]

Hello!! Currently waiting transplant for my husband. Last I heard with Covid regulations was that I will have to drop my husband at the door and go 😔I am praying that this changes soon with restrictions being uplifted.

I have no intention of driving 1hr30mins home though, I will be looking looking for a hotel room at the hospital or nearby until he is safely out of the operation/danger. I've not been able to prebook anything obviously, so as you will soon discover, life on the transplant list means living for the moment and being prepared to wing it a lot !!

Good Luck

Ewife

[Lippy42 in reply to Ewife]

Definitely winging it 😳 it's the not knowing what's ahead and still praying things will turn around and he will improve but we are certainly taking life day by day. Things have stabled at first there was something wrong every week but now we have either got use to the new normal or ste has stabled but it's just this cough now it's as though he got something stuck but when he goes for the camera on the 25th on sure we will have more answers then .take care and hope all goes well for your hubby and look after you to 🥰

[Ewife]

My heart goes out to you both. Its the toughest journey I've ever set foot on......the way they go up and down- get a good set of bloods and it makes you hope things might improve, then a virus and some bad results sends you crashing to reality. Never dreamt we would still be living such an uncertain life - definately "new normal" is story of my life atm. Just get used to one thing and something else changes. My husband is adjusting to a really slow and subtle decline in his energy. Its been really tough for us both to adapt. I can't plan mornings anymore, because so often he just isn't well enough to be out of bed until mid-day.

All the best

Xx

[Lippy42 in reply to Ewife]

Thinking of you both xx

[Huggy7614]

Hi Lippy,

We live approx 2 hours away from my transplant centre, QEHB. I got THE call around 10pm on a Wednesday eve, and was asked to be at QEHB for 0100 on the Thursday. We set off around 11pm, after a few tearful hugs with my kids, and my other half drove the wrong way out of town, until I asked her where she was going!!!

We got to hosp around 1am and I had to disappear around various departments for bloods, ct, x ray etc, around a very empty hosp, my partner still with me - Pre covid. I eventually went to theatre around 8.30am, and my other half was kept informed by the transplant co-ordinators. She left the hosp and booked a hotel room nearby, until she was called back after I came out of surgery around 4.30pm.

The co-ordinators were excellent and steer you through the whole process. They are your link to everything.

You cannot prepare for all eventualities, just be prepared to make it up as you go along. As well as his hosp bag, it’s probably more important to have one for you. Good luck with the journey. It’s hard, but it’s worth it I promise.

Andy.